McKenzie's First Halloween & Thanksgiving!

McKenzie was a Ghost for her first Halloween, she spent the day scaring doctors at the Heart Center while at her follow-up appointment with her cardiologist. We didn't bring her around family as we are waiting the six week period to avoid any infections or unwanted illness. After the cardiologist we headed home and watched Halloween movies on the couch.

We spent Thanksgiving at home as McKenzie had gotten a small respiratory infection with a fever. So, she spent the day resting while Nikki and I made our first Thanksgiving dinner. We didn't invite family over to prevent McKenzie from getting more sick or overwhelmed. 

When I was pregnant, I was so excited McKenzie would be here in time for the Holidays. After she was born and instantly needed so much medical attention, I realized my concept of what her first Holidays would be would need to change. McKenzie had her open heart surgery on October 3rd, this caused Halloween to be in the middle of her recovery. A few days before Thanksgiving, McKenzie was taken to Arnold Palmer ER for an unexplained fever, the doctors said she was in the beginning stages of a respiratory infection. Thankfully, we still dressed her up and got a photo of each holiday and hopefully by Christmas she will be able to visit with family.

Home away from home.

It's hard to believe she's been home for a month now! Today is the longest she's been home since she was born. Since birth, McKenzie has been admitted to Arnold Palmer four times. We haven't kept her home longer than a few weeks at a time and honestly, our lives are chaos. Living an hour in a half away from the only hospital that will care for her is stressful, I've learned to keep a bag packed and handy for random trips and admissions. 

Overall,  McKenzie had heart failure and G-Tube placement, she spent 10 days in the Cardiovascular ICU. One week later she spent four more days due to dehydration from her heart medication and an intolerance to her formula. Three weeks later, she spent another week for a 102. temp and a UTI which caused an obstruction to her kidney. Three in a half weeks later, she spent 8 days for her heart surgery. 

Having her home is almost like a dream - Sometimes I wonder if its safe to put my bag away or if she will end up needing to go back. The hardest part of having a baby with medical needs is the constant worry if her behavior is "normal" baby worry or if it's something related to her diagnosis. 

The hospital has been good to us and even though we've become very familiar with the staff,  I'm just hoping shes home for good, I feel like her infant months were taken away by her medical needs  - I just hope her toddler years aren't the same.